When I arrived at the appointment things were very different. He had not been sent all my records from the hospital or my previous Dr, of my surgery. I can't give details right now, but just to say he finally obtained them, and in them the pathology of my hysterectomy. He came back in the room and had me sit down and asked me if it had been discussed after my surgery what was found in pathology. No, I was completely unaware. I was just told they found endometriosis on my uterus, ovary, bladder and from the right kidney. Pathology showed I had adenomyosis as well. It was found on the back wall of my uterus.
So without giving more than I should at this point. He is very uncomfortable with taking my remaining ovary out, due to my age. He says I am too young to deal with menopause and if at all possible, he wishes to save the ovary. Though, at anytime it is my choice and I can say enough,and it will be removed. I decided to give him the month of June and part of July to see if the new hormone treatment does anything for pain relief. I also will under go a ultrasound and MRI June 17th. If that shows the ovary to be bad, example cysts and such, then the ovary will be removed.
I feel I can trust this Dr much more than my last, and he is also having trouble making sense of things. But together we will get this figured out. So for now, pain pills as needed, heating pad, and bc for hormone control. Then I return for the scans June 17th, and if the ovary is okay we will continue the treatement, if not we stop and go into surgery, otherwise I wait until July to make any decisions on what to do. So here is to luck with the new treatment, which if it is going to work, will work within the month. Dr is doing everything he can.
I truly wish I knew now what I didn't know then. I was trusting the medical community to help me in the right decisions. Surgery didn't CURE me, so they pushed me out the door and told me to find a new Dr. Well, I did just that, and he is doing his best, spending over two hours helping me decide to remove the ovary or try a new medication before doing so.
Feeling slightly more confident than before, though still feel as though I'm the host of a demon alien that refuses to let go of my body and return to it's rightful home.
I understand my Endo sisters very well now. Better than I have before, and I understand myself much better than I did before. I am one strong woman, I don't give up, I don't give in, and this has tested me to the end of my rope. When I reached the end of my rope, there were those words, "You can do this, you are not alone, and we will sort it together, just hang in there."
How important is support at this point? VERY important. If you have someone in your life that is dealing with an illness that keeps them in pain, offer a kind word. You might be amazed to know how lonely this feels, how difficult it can be to put one foot in front of the other when it hurts so much. Text messages through out the day and night, phone calls to check on me, emails and IM's, they keep me going when I feel I can't.
This is a confusing world, one I am not used to. Yes, I have always had pain, I've had two weeks each month that I would lay in bed or on the sofa and breathe through the cramps and pain and the feeling of my insides being ripped apart. But, this is different. It is not just two weeks out of the month. Since Feb of 2013, it has been EVERY DAY and EVERY NIGHT of pain. I pushed through, I continued to do all the things I did, I just took pain meds to help. I had amazing results after my hysterectomy. I felt like I had a new life, a second chance. NO PAIN! It was short lived, only two and a half months. Then the ripping, burning, tearing pain came back. Only worse this time, more intense, and constant, no relief even on the strongest medication.
I don't know how this happened, how I went from being a girl that everyone would tell to sit for a minute, to this girl that sits and tries to do at least one load of laundry and make her bed for the day. I refuse to accept this is my life now, I refuse to think this is just how it will be from now on. Because I am not capable of giving up. I can't let myself give up, and say, "Okay this is life now." I have an end to my strength, my rope is not infinite, but my supporters keep me going when I can't. They offer a hand to pull me back up, a kind word to encourage me, and the best part, I don't have to ask them. They just do everything I need to help me out. The endo sisters, spoonies, those on G+ those in my life here that keep saying... "You can do this, we believe in you." "Tomorrow is a new day." and most importantly, they know when I don't want to hear those words, and I just need to lay on the bed, with my heat pad, my hot water bottle, and my Poli and just cry, and feel someone is there to wipe away the tears.
To those people, thank you for everything. For seeing me through all this, for the awesome support and for loving me enough to hang around.
Sincerely,
A fighting Spoonie
A friend posted this on G+
a few days ago and I loved it!
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